The Big C

Goodbye, Chemo, Goodbye

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My last chemo treatment happened on Thursday.  Yay!!!  Truthfully, I was a little apprehensive.  I know that sounds weird, but no more systemic treatment is a little scary.  So happy to be done with Taxol though!

My close friend, Beth, came up from Houston bearing lovely gifts!  Another friend, Julie, also came to hang out with me at treatment, and my father was there too.  Unfortunately, you can’t make it too big a party as you may disturb others who are there for treatment.  We had a great time though, talking, laughing and taking pictures.  I rung the bell at the end to say, “yes, I’m done with chemo!” :-)

I had a special cake made for my infusion nurses and the rest of the staff.  See pics below.

20131114_144145cake  DSC05982

DSC05976  DSC05977-300x200new

Time to Get My Bitch On!

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So, I’ve resigned myself to the fact the bimx needs to happen now.  Unless the RadOnc tells me otherwise, which I think is unlikely given my mutation and personal medical and family histories.  I have an appointment already scheduled with my breast surgeon for Monday.  

I spoke with my good friend, Kim, last night.  She stated to me maybe this is the time to just get mad–It may just be the only way I’ll get through this part.  Like ‘wearing black eye-liner and combat boots to my mastectomy’ mad.  Time for grace and acceptance later.  I seriously think she’s right.  I need to get the ‘warrior girl’ inside me involved!  SCREW CANCER!!!  Basically, I need to get my BITCH on!  She mentioned a line from the movie, Dolores Claiborne.  I had to look it up. 

“Sometimes being a bitch is all a woman’s got to hold on to.” ― Stephen King, Dolores Claiborne

And this one:
 
“When it’s all doom and dark outside and only you inside to first make a light then tend it, you have to be a bitch.” ― Stephen King, Dolores Claiborne
 
I am so blessed to have such great friends in my life!  Thanks Kim!!! 

Bizarrely Open

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I realize I’ve been rather blunt in my recent posts.  Oddly ;-), there are so many emotions that come with a cancer diagnosis.  Some people don’t want to talk about it for long periods of time, some never will, some only open up to certain trusted people and still others want to scream at the top of their lungs to the world what they’re faced with.  I’ve done it all.  I’ve been faced with bad circumstances for a while now, longer than my recent cancer diagnosis.  This ain’t my first rodeo. ;-)  Recently, more often than not I’ve been very candid, at least in the writings on my blog.  Hell, I may be boobless soon enough (hopefully, only for a short while) and you can’t imagine the emotions surrounding just that.  Writing on this blog has been very cathartic for me.  It has helped me process thoughts and externalize my fears. 

And, yes, part of me does wonder why the hell I’m putting this all out there–Such an incredibly personal thing.  Do I really want everyone to know I may be boobless soon?   Well, after careful contemplation, I say, “Screw it!”   What I mean to say is, “I’m getting over it.”  This is hell, and people should know what women with BRCA mutations are really faced with.  The decisions we’re asked to make (the possible, and likely, removal of reproductive organs and mammary glands–aka, ovaries and boobs) due to an extremely high cancer risk, a continual threat that NEVER relents.  You have to learn to live life on another playing field and with another prospective–Something I’ve never been good at.  I’ve lived exactly the opposite of how I should.  For me, this has been a perceived plague that has followed me throughout my life.  My mother, my aunt (my mother’s identical twin) and my grandmother all died at very young ages (in their thirties) of this disease.  I’m the same age now that my mother was when she died.  I think I’ve always given it the upper hand and therefore let it wreak havoc on my life.  NO MORE!!!   I will rage against the dying of the light!!!!  Effing cancer!!!!!

Who knows, maybe someday others outside my small realm will read this blog; and, just maybe my story will help other women with BRCA mutations who are faced with these gut-wrenching decisions too.

Sorting through it all

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I hung out with my friend, Connie, on Saturday.  We grabbed some lunch, did a little shopping, got a mani/pedi, and then had a little dinner.  She brought up a crucial point I must consider in making my decision.  I have to think about which choice will not limit my future reconstructive or treatment options.

You can only have so much radiation in your lifetime.  They cut you off after a certain amount.  Makes sense–Who wants to spend the rest of their lives glowing like a neon light bulb and irradiating everything in their path.  Radiation may also limit my reconstructive options.  Plus, I planned to have boob surgery regardless.  In choosing radiation, I’d likely have to wait much longer for bimx/recon surgery.

I think now that it may just be more favorable for me to separate the mastectomy and reconstruction for a number of reasons (i.e., safety–it lessens the risk of complications, less surgery and recovery time, less trauma and contemplation over choices).  Many women choose to wait on reconstruction simply because they don’t want having to think about reconstruction to intervere with the cancer treatment itself.  Plus, with my hightened fear of any surgery, in this respect, taking it one step at a time would be more beneficial.

The fear of reconstruction has kept me from really going for prophylactic surgery prior to this.  Reconstruction has more risk of complications (failure of implants or flaps, higher rates of poor wound healing, skin and donor tissue necrosis, and the list goes on).  Mastectomy alone, as with all surgery, has its risks, but I’ve already been through the mega trauma of serious surgery with major complications and my fears of having these surgeries together are valid.  I’ve already witnessed first hand the misery complications produce.  Separation will allow for a slower induction into the long, reconstructive surgery process.

With delayed reconstuction, my fear is what psychological damage may come in the aftermath of the mastectomies alone.  I was never really into shoes, but after my panc surgery, I totally become a shoe girl.  The higher the heel, the prettier the style, I had to have it.  I wanted some small part of me to feel pretty and feminine when the rest of me didn’t.  Who knows how intensified such a feeling could become after mastectomies.  This is a very scary concept for me.   All of this comes secondary to the simple fact I’m doing this to try and save my own life, but it doesn’t lessen the valid, emotional trauma I’m still faced with.

I watched Super Soul Sunday yesterday with Mark Nepo and Kris Carr (two of my favorites).   In listening to Mark Nepo’s conversation with Oprah and the words of Kris Carr, I was able to gain a greater understanding of my own personal growth in relation to my cancer.  I see the role it’s playing in opening/awakening me to my own spiritual path.  I understand more clearly about my own conscienceness and the power and strength that come from surrender and acceptance.

I know we are all constantly learning, changing and evolving.  My hope is that I am able to surrender to and accept making such a profound choice with enough strength and courage to lessen any psychological hardship.  My desire is for such growth to bring me to a state of grace, acceptance, extreme self-worth and self-love.  This, in turn, may help me to dismantle some of my own false beliefs about the shallow, physical aspects of beauty and gain a truer understanding of my own womanhood.

System overload–Possible shutdown soon

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So, this is where I’m at right now.  About to make what feels like the most crucial, life altering decisions of my life–not that I haven’t already been here before multiple times.  This time it’s different–So much more intense, and close!  The decisions seem more brutal and overwhelming even though I’ve known of these possible scenarios for some time.

I’m still currently not a candidate for immediate reconstruction and my doc is not content on waiting any longer, saying that radiation several months from now won’t be the same as doing it right after chemo.  I know she’s right.  So here are my choices:  (1) do bimx now and delay reconstruction [With this I’m faced with more scarring, more surgeries and giving up a huge, physical part of my sexuality as a woman, at least for a time in delaying reconstruction (I already have a hideous scar from my panc surgery that still needs to be fixed.  Can I also conquer the part of me that still sees my identity as a woman wrapped up in my having breasts?); however, I’d be gaining the most benefit in combating an exceptionally high recurrence rate of a very aggressive, hard to treat cancer that so far, in my case, they caught in its earliest stage with no lymph node involvement]; or, (2) I can still take the easier route of radiation knowing I’d be delaying bimx/recon even longer and still playing with the risk of recurrence, secondary or contralateral breast cancer (highest rate within 3 yrs).

No-brainer, right?   Currently, and quite bizarrely, studies show mastectomy vs. lumpectomy with radiation to have the same survival rates.  The latest studies showing lumpectomy with radiation may even be a safer bet.  Again, though, I’m in the “you got really genetically screwed” category so not sure how much of these studies are based on BRCA1 mutants.  As Nurse Pat at TxOnc told me Thursday, “you don’t have an old person’s cancer, you have a young person’s cancer, which is more aggressive.”

Before you judge or say, “I know what I’d do,” just remember you are not walking in my shoes!  Sometimes having to make the choice seems harder than not, even though you know that having the choice is certainly better.

Can my psyche handle the decisions I’m faced with, now and after?  I don’t know.  I just don’t know.  A friend stated earlier today, “Whether your psyche can take it won’t matter much if you’re gone.”  She’s right; I just have to get in the right headspace about it all.  I have to go through the emotions and the continual processing of it all.  Its torture I tell you!  I have further consults with the RadOnc and my breast surgeon so those will hopefully help in my decision process.

Honestly, every aspect of my life is totally fubar at present and I feel like I’m in system overload and about to seriously shutdown at any minute.  You know that saying about God only giving you what you can handle?  It’s total crap in my book!  One friend brought that exact phrase up to me last year and then said, “God must think you can handle an awful lot.”  I hate hearing the phrase now!  Sorry, I know I’m being a complete downer in this post, but it’s where I’m at and it all should be captured, not just the upbeat, inspirational stuff.

Please send warm thoughts and wishes as my coming days, weeks, months, and possibly years will be harder than I can conceptualize right now.  As if I haven’t already been through the ringer on a consistent basis, well for as long as I can remember now.  Where is the light at the end of this dark tunnel?  Is there one?

UPDATE:  In going back and re-reading additional research articles, doctors opinions and posts from women on the triple-negative foundation forum, those few of us who are BRCA1 with TNBC present with greater risk of recurrence regardless of surgical choice or staging.  TNBC is scary, nasty and tricky.  It doesn’t play by the rules.  “TNBC may harbor more microscopic residual disease” and therefore mastectomy more highly recommended, but not necessarily a safer bet.  It is still possible for microscopic cells to travel to distant sites, be found in residual breast tissue or lymph nodes even after treatment for stage 1 diagnosis and/or bilateral mastectomies.  Conclusion, double mastectomies could save my life or I could be damned regardless.

I’ve never shied away from learning the hard facts.  Information is power, even when it’s difficult to take in.  That said, I’ve read some of this before, but I just didn’t want to believe it.

A woman’s choice of what she is most comfortable with still applies.  Some women have lumpectomies and never get TNBC or other type breast cancer again and some have double mastectomies at an early stage or even prophylactically (preventive, before cancer) and are then diagnosed as stage 4.  As with the rest of life, I guess, it’s all a crapshoot.

Radiation buzz kill

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So much for my stay in Oblivion.  Time to pack my bags, check out and head back to Reality.  My doctor wants me to consult with the RadOnc today.  I have always been a strong believer on getting all the information you can to make the best decision you can make, so this is sound advice.  However, my MedOnc has practically obliterated my false hope to push the surgery date.  She isn’t content on waiting and I believe has been giving me all this time to let me really wrap my brain around the life altering decisions I have to make within the next few weeks.  Have I mentioned how much this all sucks?  What a ridiculous understatement!!!

More sisters

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I ask that whoever reads this post please read/view the following articles and websites, which will give you a greater understanding of my, and every other woman’s, battle with BC.  Amazingly strong stuff and must be witnessed, even if it makes you uncomfortable!  Please, for my sake, READ/VIEW all of the below!  These women are all super brave and their stories are incredibly important!!!

‘My Breasts Are More Than A Pink Ribbon': Double Mastectomy Patient by Tiffany Rashel, November 5, 2013 (originally in ENSPIRE MAGAZINE).

Faces of Breast Cancer: A Global Community by Tara Parker-Pope, The New York Times, October 15, 2013.

   This gets me every time: 

Bob in Edina, Minn., shared the story of a husband who supported his wife through breast cancer. “I remember being overwhelmed with information,” he said. “I learned that hair and scars don’t matter.  My favorite response to the question ‘What do you think when you see my scar?’ was a husband who said, ‘I see life.’”

The Scar Project by David Jay

http://www.upworthy.com/you-might-see-tattoos-in-a-new-light-after-you-see-them-on-this-woman?c=ufb1

DIY retreat to commense this weekend

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I’ll be preparing and focusing on the start of my retreat this weekend.  I’m excited to take some serious time to focus inward and make serious changes regarding my physical, mental, emotional and spiritual wellbeing.  I’ve been teetering back and forth for some time.  Making strides and then collapsing back into old habits again.  This last time in a serious way!  I need crucial change now!   It’s time to dig in, work hard and move forward.

Yesterday was my 9th chemo treatment on Taxol.  3 more to go.  The countdown has begun! :-)  My last treatment is November 14th.  I was thinking of an ‘end of chemo’ happy hour or something–Possibly at my favorite Austin restaurant, Fonda San Miguel.  I will think on it some more.  For the very few who actually read my blog, please chime in!

I had a long heart to heart with the nurse practitioner at the MedOnc’s office yesterday.  She noticed that I’ve been moving in the wrong direction regarding my health and wellbeing and not focusing any longer on preparing for surgery.  I seem to be sabotaging myself, yet again.  Just the thought of surgery makes me teary-eyed.  I started getting emotional just talking with her about it.  It’s not just that it’s a major, life-altering surgery; my fear comes from the pancreatic surgery I endured 3 years ago for a rare, mucinous cystadenoma.  Initially, everything went fine, and then the complications started.  I suffered many complications, several more stints in the hospital, more surgeries, and painful rehabilitation with a 6-month recovery.  I cannot express here how brutal that all was.  I almost didn’t make it a number of times.

This has struck a fear of surgery in me that is so strong.  Honestly, it’s not the fear of surgery itself, but of the complications that can develop.  I have to move past it, somehow.  I’m hoping my DIY retreat will help me conquer this fear and move forward with preparing for surgery.  I cannot afford to keep moving the timeframe of surgery.  It must happen within the next 6 months, and my doc has made it clear sooner than later.  My MedOnc has given me a window that I must stick to, to stay on the safe side of things, hopefully!

My MedOnc has asked me to consider mastectomies and delaying reconstruction, but even now, as I write this I’m tearing up.  I cannot.  It’s too hard.  It’s all really hard.   My situation is different than the average woman’s, always has been.

Many women jump at having this done, immediately.  Their fear is very justified.  More and more women are having bimx/recon surgeries, a good majority who do not need to take such drastic measures.  Breast cancer scares the crap out of you.  I know, I’ve had this monkey on my shoulder my whole life!  I, unfortunately, fall into the category that absolutely should take such drastic measures.

I’ve always been on the forefront of this.  Knowing of my family history, I started seeing my breast surgeon in my early twenties.  She has been monitoring me ever since and even performed my recent lumpectomy.  When the BRCA gene testing became available, well, I didn’t do it right away but knew if I found out I did have a mutation I’d do what I needed to do to save my life.  But, after the panc surgery, everything became so much more difficult.  So many obstacles, around every corner.  The opposite has happened.  I’ve turned my fear of surgery into a more palpable beast than my fear of dying from breast cancer.  What kind of crap is that?  It’s all hard–So many brutal decisions!

I know I’m a survivor, I always have been, my whole life; but, how much can God place on one person?  How strong do I have to become?